Information, communication, advocacy, and complaint: how the spouse of a man with aphasia managed his discharge from hospital

Abstract

Background: The impact of stroke and aphasia has been recognised as a family problem for many years with studies highlighting spouses' need for information at different times along the recovery journey, for practical and emotional support, recognition, and respite. In particular, the decision-making around discharge from hospital, or planning for rehabilitation, is not always collaborative even though family involvement assists family members to plan and adjust to their new caring role. Aims: This study aims to explore how the wife of a man with aphasia managed his discharge from hospital in the acute phase post-stroke. It provides an opportunity for health professional learning and sensitisation through the detailed analysis of a de-identified but a real case that happened to reflect key issues reported by families in previous research: lack of information, poor communication with healthcare professionals, and the need for advocacy. Methods and procedures: The data for this paper are drawn from two sources: a single in-depth interview with the wife collected as part of an earlier large multi-site study that included interviews with 48 family members of people with aphasia after stroke; and two complaint letters she wrote to the hospital and two letters received back. This study uses a narrative analysis of the interview, and a systemic functional linguistics (SFL) analysis of the letters in order to shed light on the key issues of information, communication, and advocacy. Outcomes and results: The narrative analysis of the interview and the SFL analysis of the letters together help to unpack the reasons why the wife felt motivated to write a complaint letter to the hospital where her husband had been admitted post-stroke. The letters themselves demonstrate careful choices of language for both parties, with the hospital discounting the wife's concerns and closing down the exchange. They also reflect a profound misunderstanding by the hospital about the functional consequences of aphasia and its impact on the family. Conclusions: It is important that family members, taking on a caring role for people with aphasia after stroke, are supported with clear information and good communication in acute settings. This may enable them to be engaged in the recovery process as partners with healthcare teams and more effectively support adjustments to poststroke life in the longer term.

‘You become their advocate’: The experiences of family carers as advocates for older people with dementia living in residential aged care

“…Poor communication about issues concerning their relative in the RACS, including instances of dishonesty or deliberate concealment, also prompted carers to advocate for their family member. Similar reports are found in community aged care literature (Carlsen & Lundberg, 2018) and the literature reporting care of older people in acute care settings (Hersh & Armstrong, 2020), especially when instances of harm occur (Hemsley et al, 2013). A lack of open communication has been shown to be a major reason for distrust in care, leading to greater involvement and monitoring behaviour of families (Haesler et al, 2010).…”

Exploring the shared experiences of people with stroke and caregivers in preparedness to manage post‐discharge care: A hermeneutic study

“…Information about post‐discharge services was not communicated to them at hospital discharge (Chen et al, 2020). Young people with stroke encountered challenges sourcing post‐discharge age‐appropriate support (Hersh & Armstrong, 2020; Stokman‐Meiland et al, 2020). Shortened hospital stays added more challenges for nurses and multidisciplinary teams to assess and address these issues during discharge planning.…”

‘Well, what are you going to do when you’re out there?’: a scoping review of successful hospital discharge for people with acquired disability and complex needs aged 18–65 years

“…Sixteen studies were included in the review. The characteristics of included studies are presented in (Borg et al 2020;Chu et al 2020), evaluating health and disability funding timeframes (Houston et al 2020), understanding the hospital-to-home transition (Biester et al 2016;Conti et al 2016;Hodson et al 2016;Abrahamson et al 2017;Dwyer and Mulligan 2017;Fitts et al 2019;Irgens et al 2020;Hersh and Armstrong 2021), evaluating discharge documentation (Kable et al 2018), evaluation of a transitional care model from hospital to the community (Qian et al 2019), and development of an integrated care pathway for people recovering from stroke (Abdul Aziz et al 2017).…”

“…New (2015) found that negotiations with family members accounted for 12.8% of barriers to discharge in an SCI unit. Across qualitative studies, close others considered their involvement in the discharge planning process as crucial (Conti et al 2016;Abrahamson et al 2017;Hersh and Armstrong 2021). In two quantitative studies, people with acquired disability and close others were involved in the development and delivery of discharge plans and post discharge rehabilitation programs (Borg et al 2020;Chu et al 2020).…”

“…During the discharge process, close others acted as advocates to secure supports on discharge, but also to inform the clinical team of the realities of home life and the feasibility of certain support models (Conti et al 2016;Abrahamson et al 2017;Hersh and Armstrong 2021). Close others reported often having to persevere and routinely follow up with providers to secure required supports: 'I'm quite happy to badger the system until I get something sorted … It just annoys me that I have to do that … because I don't think we should have to, because I think things should be in place' (spouse of person with ABI; Abrahamson et al 2017).…”